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About ajw4790

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  • Birthday 01/01/1984

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  1. Yes, I can totally identify with what many of you are describing! This can be one of the more frustrating symptoms at times, because it is hard if not impossible to explain, it happens for a split second, but multiple times a day. It can make you feel unsteady etc. and not want to do a whole lot due that you don't feel comfortable in the space you are in due to your positional/proprioceptive sense being totally off.... CRAZY! I have no idea what to do about it or how to avoid etc... A mystery I would like to be able to solve...
  2. Hi again! I continue to think about this topic... SO, if we are not getting enough oxygen to our brains, it makes sense that something like this could be helpful to our symptoms. I realize it wouldn't be a cure all, but if it makes "normal" people feel more energized etc. Why wouldn't HBOT be helpful to us? I wish it was cheaper and easier to find! I think it is interesting that it was also on Oprah... I missed that. And, that Kaye has actually TRIED it and had SUCCESS with it! This has also made me ponder oxygen therapy as a whole and how that may or may not be helpful to us. I WOULD REALLY
  3. Hi everyone! I don't remember this coming up before (if it has... whoops!) . But, I was wondering if anyone has any knowledge or experience with Hyperbaric Oxygen Therapy??? I have not seen anything about it being used with patients with dysautonomia etc. But, it has started being used with a variety of diagnoses, including Lyme disease, CP, autism, brain injury etc... I came up with this question after watching an interview on a daytime talk show with Jenny McCarthy saying that she has had great results using it herself, and that it is being used with children with autism. It is obviously v
  4. Hi, I have gone to Cleveland Clinic once to see a neurologist at the ANS clinic. I am going back next week for more testing. If you are coming from further away I think they can work to schedule tests while you are in town. The dr. didn't have my records until I gave them to him on the day of my appointment which led to a delay in him knowing what tests I needed. After testing I was told I can continue to see him semi-regularly or he will communicate with my neurologists here as far as treatment. He does work with may patients with dysautonomia. For the people who go to Cleveland Clinic and do
  5. Does anything help these Florinef headaches, or you just have to put up with them? If so that is awful! They have talked about trying it with me, so I was curious if there was at least some help to get through the side effects? Sorry, I have no advice because I haven't tried it yet!
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